Psoriasis Inside Perspective Campaign

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I collaborated with Celgene Corporation to create this post. Personal opinions and thoughts are my own. 

For me, the spots appeared overnight when I was 15 years old. Even though my grandma had plaque psoriasis, my spots made such an angry and sudden appearance that my parents and I thought it was an allergic reaction. The dermatologist quickly confirmed that it was psoriasis and my journey began. 

After my doctor made the diagnosis, he started talking to my mom and me about what treatments we’d start with and then what the backup plan would be if the first treatments didn’t work. My first emotional challenge with psoriasis was understanding that there was no magic solution that would clear my skin and that this was something I would likely live with forever. Though my grandma visited Alaska when she was in her 50s and never flared again, so I have hope and still need to plan a trip to Alaska! 

When my doctor diagnosed me with psoriasis it was the mid-90s and there were a lot of topicals on the market –gels, creams, mousses – and everything was messy and greasy. For extra oomph, I’d apply the topicals before bed and wrap myself in saran wrap to keep them in place. When none of those worked, my doctor switched me over to light therapy which took place several times a week at the dermatologist’s office. I spent the first few years of my diagnosis treating with topicals and in a light box, but all my treatments were still solely focused on my skin, so I still associated psoriasis as being just a skin condition. Over time, many new treatment options have become available that treat this autoimmune disease from within including inejctions, biologics and oral therapies. It’s important for people to speak with their dermatologist to find a treatment plan that works for them, but it’s great to know all the treatments that are out there now!

In addition to learning more about new treatments, I also was recently introduced to the INSIDE PERSPECTIVE campaign, by Celgene Corporation and it reminded me of my own journey to understand how living with psoriasis impacts my life daily. It took me over ten years to completely understand that psoriasis isn’t just a skin disease and that it starts inside the body. The campaign encourages people to go beyond the surface of psoriasis, and learn more about the importance of their condition. As part of the campaign, TV host and fashion journalist Louise Rose switched lives with Alycia, a finance analyst living in New York City, who has been living with psoriasis for 16 years to get an inside perspective on each other’s lives – and their daily challenges living with plaque psoriasis. Their full story can be viewed at www.PsOPerspective.com

Over the years, I’ve come to learn that I need to treat my psoriasis from within because it starts from within and effects both my body and mind. I was letting psoriasis determine what I wore, how I felt about myself, and how I lived my life. When I had a flare, I hated meeting new people or meeting with clients and would choose not to socialize in certain situations or go to certain places (like the beach). 

With my current lifestyle as a commuting, working, mom of two toddlers, who sometimes writes a blog, achieving balance can sometimes be incredibly overwhelming and it reflects on my skin. I’ve been told that I don’t make enough time to take care of myself, so I’ve been mindful lately on ensuring that there is calmness within my body and mind. I’ve stopped letting psoriasis dictate the choices I make, and I’ve accepted that it’s a part of me. 

Alycia and Louise

I’ve had my ups and downs with flares throughout the years, but I have an amazing support system in my family and friends who help me through the harder times. In the INSIDE PERSPECTIVE video, Alycia and Louise are immediately connected since they both share the commonality of living with psoriasis. The psoriasis community includes some of the most incredible people I’ve met in my life, because they just get it and there’s a focus on maintaining positivity and hope. 

Becoming a part of the psoriatic community has been one of the most important ways that I feel supported and can support fellow patients. I absolutely love that there are campaigns out there focused on showing what its really like to live with psoriasis and putting emphasis on the fact that it’s not just a skin thing! 

Cyndi Lauper Talks Psoriasis and Hope

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DEnl1x-W0AI5JSTIn honor of World Psoriasis Day, I had a once-in-a-lifetime opportunity to talk with the incredible Cyndi Lauper about her new song, Hope, which was inspired by the conversations that she’s having with people in the psoriasis community and by her own journey with the disease. The song title so purely captures exactly that feeling that we all have. But more than that, her song is a unifying anthem that beautifully connects and inspires the millions of people around the world living with psoriasis. She said her inspiration for the song came from “All of these people. It was so moving and kind of heartbreaking when they finally found something that worked. But the one thing that I got from them is that they didn’t give up. They never gave up. so I thought that was a good thing to remember. And that it gave me a lot of hope and it gives a lot of people hope.”

Music has the power to evoke strong emotions and transform experiences and simple moments, so I felt an incredible gratitude towards Cyndi who created such a special tribute to a community that has impacted my life in such a positive way. Having someone with such a powerful voice in this community speaking with us and so beautifully translating our day to day feelings is just too amazing to put into words. Through her journey with the See Me campaign, Cyndi met Todd Bello of Overcoming Psoriasis and he said that it was a game changer with Cyndi talking about psoriasis and that she was going to speak for him and for us. For her it changed everything, “because 1.) I felt a responsibility to do it right and 2.) I wanted to give people hope so they could help themselves.” 

Even over the phone, her energy radiated with confidence and power. I was prepared with a few questions, but from the start of the call it was more conversational and about sharing stories. There’s an instant connection when you meet or talk to someone else with psoriasis – you both just get it. You understand their struggles with simple sounding things. Getting out of the back seat of a taxi should be relatively easy, right? But not when you leave your skin in there, like Cyndi did once! “Oh please, the creams! Come on! I put so much cream on that I got out of a cab one time and my skin came off on the cab. That’s how thin my skin got. I have no idea it was making my skin that thin. My skin is still healing.” Many of us with psoriasis, struggle with the decision of what to wear to work and trying to find the energy to power through the day when you have a psoriasis flare. Cyndi has those same struggles, but for her it was about designing costumes to cover her psoriasis on stage and in the public eye and performing and traveling all over the world with a crazy tour schedule.

We swapped stories of the ridiculous treatments we’ve tried, including rubber suits and rolls of static cling that we wore to force those horrible, smelly topicals creams to stay on and hope they do their job. When I asked her what was the most “out there” treatment she’s ever tried, she told me

“I went to an alternative doctor once while I was trying to do a tour. I had this idea that I would run through the arena like a boxer, then climb up the stairs and I’d do this whole number. Meanwhile for my psoriasis, I had been making teas to soak my feet in at night and I made a tea bath to take a bath during the day, so basically I was detoxing. I was detoxing while I was touring and that was the craziest thing I did because at one point I got global amnesia. My body went into shock because I was doing this and somewhere around the 5th or 6th song I forgot what I was doing.… I don’t know how I got through.  I heard it was really good!”

Cyndi is unapologetically herself and a powerhouse advocate for the psoriasis community.

For so long, she’s covered up her skin and battled through her sickness while creating such an incredible life and career for herself.

She said “I got better doing this work. Before, I didn’t have enough information. But there is information and you need to research. Go on this webpage SEEMETOKNOWME to hear everybody’s stories. Go to the National Psoriasis Foundation and hear what they have to say. Find the practitioners that actually study psoriasis, not cosmetology. And not that I’m knocking it because, honey cosmetology is everything when you get older! When you’re sick, you feel powerless but knowledge is power.” 

Visit https://seemetoknow.tumblr.com to see more about Cyndi’s incredible psoriasis story and listen to her inspirational new song, Hope.

3 Ways to Support Your Partner with a Chronic Condition

IMG_3554Empathy and patience might be common characteristics for many partnerships, but they become essential when one or both people are living with a chronic condition.

For my husband and I, it’s both of us.

I was diagnosed with psoriasis when I was a teen. He’s been living with neck arthritis that causes chronic migraines for the past 15 years.

We agree that these two traits are critical to overcoming the challenges and setbacks that can be associated with our conditions.

We also have two toddlers in the house, so teamwork is especially important as flares can be debilitating to either of us.

When I experience a psoriasis flare-up or my husband has a migraine, we can recognize each other’s limits and step in to ensure that our kids get what they need.

Of course, our relationship isn’t just reliant on being each other’s caretakers. There’s more focus and need for a true partner and support system to make sure that there’s never any pent-up anger or resentment.

I wouldn’t say it’s lucky that we both understand firsthand how challenging a chronic condition can be, but it does help because we both get it. We both understand the frustration when our conditions force us to cancel plans or we don’t have the energy to get it all done.

Check out the article I wrote for Healthline HERE to learn about three ways you can support your partner living with a chronic disease.

 

5 Fatigue-Busting, Flare-Fighting Snacks for Busy Moms and Kids

There are certain foods that can trigger a flare and some that can help fight inflammation inside your body, so its important to incorporate foods that focus on the latter into your diet.  Eating with a chronic disease can be challenging enough, but throw in some tiny humans who ALWAYS want to snack and have VERY strong opinions and it can make it even tougher. But with a little bit of pre-planning, we’ve found options that keep everyone happy and healthy.

I’ve rounded up five of my families go-to snack foods in my latest article on Healthline.com. Check it out here:  healthline.com/snacks

 

 

5 Ways to Help Your Child Conquer the Emotional and Physical Impacts of a Skin Condition

Between physical symptoms, the emotional impact, social and peer pressure, and the overwhelming abundance of treatment options, living with a skin condition – be it psoriasis, eczema, or acne – can be challenging, for both a child and their caretaker.

Consider these five ways to help your young one or teen navigate, understand, and persevere. Read more in my latest article for Healthline.com